Kadee, I wanted to correspond with you because our spouses are the same age and both are in the same stage of FTD. I have been seeing a serious decline in the past month and I wanted to find out from you what does your spouse do or not do at this point. My husband's meds are aricept,namenda, seroquel, cogentin, synthroid,megestrol,keppra xr. He is at the point where he is in bed about 20 -22 hours a day , he comes down for breakfast and lunch but has been refusing dinner other than applesauce and iced tea. He is still continent but had his first bm on the bathroom floor last week. his latest mri showed generalized cerebral atrophy, and chronic microangiopathic disease and mild sinus disease. He is started slip on the stairs so his walking is definitely being affected. He does nothing at all but watch tv and sleep I take him to daycare once a week try to get him to go twice but sometimes its too much.last month the doctor said he doesn't have long to live, a year or so. What kind of prognosis are they giving you. My husband still talks but most of time is not making sense . This morning when we were talking he said I sounded like his wife....WOW I didnt want to ask who did he think I was so I just went along with the conversation
Angelb, As I have mentioned in previous post my husband is 58 years old, probably, more of a 6 on the Alzheimer's scale now than a 5. He was on Namenda & Razadyne ER, however, after the FTD diagnoses, the Neurologist wanted to stop both, however, I was afraid he would really decline, so we just stopped the Razadyne, saw no difference. At the next appointment, the doctor felt we should stop the Namenda, he feels with FTD at this stage it wasn't helping. Again, I saw no difference. He is now on Lexapro, Lamotrigine & Levetiracetam the generics for Lamictal & Keppra. He is still continent, however, after I caught him pooping on the garage floor, with suggestions from other members, I decided it was time for the Depends. Also, while I was cleaning up the mess, he took off his jeans & underwear....stood nude from the waist down with the garage door up...I almost had a heart attack when I saw him. He had no clue why I way crying. He cannot dress, make any type of decision, shower, wash his hair, brush his teeth,shave, follow any type of directions, write is name, remember any personal information, he does not know my name or our boys, terrible table manners, carry on a conversation...all words come out jumbled...other than NO & cuss words, will not use toilet paper or wash his hands, He does not know his image in the mirror, however, has nice conversations with the mirror & always thinks the man has on the same clothes as him which he laughs about. He was getting up 3-4 times a night, however, recently he has been sleeping 9 hours at night, then eating breakfast, but falling back to sleep, sometimes before he has drank all his coffee. He takes a 2-3 hour nap around 12:30, then around 9:00 he falls asleep in his recliner. He also is very unsteady & shuffles along. Next post.
Things he can do: He can tie his shoes, however, sometimes places them on the wrong feet, zip his jacket. His Neurologist has never mentioned a time frame & I have never ask. He started losing his memory 8 years ago, however, the last 2 years he has really declined. His mother also suffered from dementia at a much older age, she passed away after 8 years. If you would like to chat anytime, please drop me an e-mail or I am on Facebook. Take care, Kadee
angelb, I too have an FTD spouse who is now 59 and was diagnosed in October 2008. I think he is solidly in stage 5 and some of stage 6. He was on Aricept, Namenda, Lexapro, Depakote and Klonopin last year but due to drug sensitivities, the dr took him off of all of those and introduced Neurontin, Seroquel (75mg am, 50 mg pm, 75 mg night) and Klonopin at 5:00 pm. Right after they took him off Aricept and Namenda, he had the most mental clarity he's had in 12 months, but a year later that has somewhat declined. I guess I m lucky in someways. He can still follow directions and "sequences" properly, meaning he can dress himself in the correct order - underwear, socks, pants, shirt, etc., he can follow detailed instructions like "get the dinner plates, set the dining room table, get eating utensils, napkins, etc". He is still continent and sometimes wakes up in the middle of the night to use the bathroom. Regarding bm's, he uses the toilet appropriately (no accidents) but his cleaning of himself is not very good, so we throw out many white bvd's. I've resorted to using dark colored underpants, telling him that they are the "in" thing and he looks sexy. They still get dirty but you can't see the stains on the underpants. He understands "sexy". Right now he can follow directions, will bathe with encouragement (although he will not step into a bathub with the water coming out of the shower head) walks reasonably well (but is becoming slightly unstable), can converse in a social setting but does not talk with me very much, can read but doesn't comprehend, do any math problem (he was a math major), sleeps 8-9 hours a night and then naps at least 2-4 hours a day in usually 2 intervals. He can still feed himself, clear the dinner table, put dishes in the dish washer, etc. He still knows I am his wife (I'm grateful for that). His brother (66 years old) just passed from dementia. GOSH, after reading my post, I guess I should be grateful he's able to do what he can. The physical abuse before meds was unbearable, I must say that. Oh, and he doesn't remember any of our early married years.
Jim is 62 and has FTD/Motor Neuron Variant. He can walk himself around, seated in his wheelchair, stand to pivot. He feeds himself a soft diet, using weighted utensils. He cannot wash or dress himself. He can use the remote control and his cell phone, although he just lost the cellphone so I programed an old one that I had. He "reads" the newspaper and watches tv with headphones, but gets confused with complex plots. He cannot tolerate noise or confusion. He still goes online to look at his email, but doesn't often respond to it. He is still continent,, but slowly losing the sensation of having to go. This leads to an urgency when the time comes. He forgets to ring for help and we all fear him falling. With the MNV he is losing more and more muscle control. He is now on a bi-pap machine due to atrophy of his lungs, his epigolotis has lost its elasticity and sometime blocks his airway. He chokes on water and food, due to the muscles in this throat weakening. I really fear what will happen if he catches a cold or flu. His greatest joy is when I visit with the puppy. God how that man loves her. Autumn has her own draw in his room with a water bowl, pee pad :o) treats and toys. I swear he is happier to see her than me! It's ok though, I'm happy if he's happy. He still loves me to take him out for lunch. I try to do this once a week. I try to pick places where he can get easy to swallow food. Denny's for pancakes, a neat little Italian place for pasta, or a seafood spot. I watch him carefully and remind him to take small bites. It's the small things that make a difference now.
G was dx with FTD three years ago, but was symptomatic for about 4 years before that. He is in a huge decline now..falls constantly, but it is due more to how he gets up and down than anything else. He is now using a walker (when prompted). can't deal with the TV or cell phone. Can use a land line phone most of the time, but can get into trouble with that too. He dresses himself (changing clothes all day long), is continent, feeds himself, but spills all over everything. He showers, but too quickly, doesn't remember which day he showered last. Has fairly well given up reading anything..picks up his book now and then, but !! Still tries to do computer jigsaws, but that is fading also. Last night he left the basement door open all night...my bad..I need to follow him around, I guess. Is obsessive about household details, always wanting to check on things that caused problems in the past (frozen pipes, split siding, hot tub works (hasn't been used for over a year)). Is on seroquel 2x day (50mg ea)and prosac.Can't really carry on a conversation, lays on beds or sofas most of the day..moving constantly. He's a mess!